Anne Norup

Emotional distress and quality of life in relatives of patients with severe brain injury: The first month after injury

Primary objective: To investigate emotional distress and quality of life in a sample of Danish relatives of patients with severe brain injury at admission to intensive rehabilitation in the sub-acute phase. Research design: Clinical convenience sample. Methods and procedures: Participants included 31 primary relatives of patients with severe brain injury. The participants were recruited at admission to Traumatic Brain Injury Unit, Copenhagen University Hospital, Glostrup. All relatives completed the depression and anxiety scales from SCL-90-R (Symptom Checklist) and the Role Emotional, Social Function, Mental Health and Vitality scale of the SF-36 ∼ 36 days after injury. Data concerning severity of injury, the patients’ level of consciousness and function was also collected. Main outcome and results: The participants had significantly lower scores on all quality of life scales (p < 0.01) and significantly more symptoms of anxiety (p < 0.01) and depression (p < 0.01) than normal reference populations. Correlations were found between the patients’ condition and the level of anxiety and depression in relatives. Conclusions: The majority of relatives had severely impaired quality of life and symptoms of anxiety and depression at the time of admission. Future research should focus on developing and evaluating interventions in the acute phase.

Depression, anxiety and quality-of-life among relatives of patients with severe brain injury: The acute phase

Primary objective: To investigate the emotional well-being of relatives of patients with a severe brain injury in the acute setting, as well as risk factors associated with high anxiety and depression scores and impaired quality-of-life. Research design: Clinical convenience sample. Methods and procedures: Participants included 45 relatives of patients with severe brain injury recruited at a NICU. All relatives completed selected scales from the SCL-90-R and SF-36 ∼ 14 days after injury. Data concerning the condition of the patient were also collected. Main outcome and results: Of the relatives, 51% and 69% reported anxiety and depression, respectively, as well as significantly impaired quality-of-life compared to normal reference populations. Regression analysis revealed that up to 20% of the variance in depression and anxiety scores could be explained by the CRASH 2 Mortality prediction. Conclusions: The majority of the relatives had severely impaired quality-of-life and symptoms of anxiety and depression during the patients NICU stay. Future research is required to explore stressors and evaluate effects of psychological intervention in the acute setting.

Following international trends while subject to past traditions: neuropsychological test use in the Nordic countries

Abstract Objective: Historically, the neuropsychological test traditions of the four Nordic countries have spanned from the flexible and qualitative tradition of Luria-Christensen to the quantitative large battery approach of Halstead and Kløve–Matthews. This study reports current test use and discusses whether these traditions still influence attitudes toward test use and choice of tests. Method: The study is based on survey data from 702 Nordic neuropsychologists. Results: The average participant used 9 tests in a standard assessment, and 25 tests overall in their practice. Test use was moderated by nationality, competence level, practice profile, and by attitude toward test selection. Participants who chose their tests flexibly used fewer tests than those adhering to the flexible battery approach, but had fewer tests from which to choose. Testing patients with psychiatric disorders was associated with using more tests. IQ, memory, attention, and executive function were the domains with the largest utilization rate, while tests of motor, visual/spatial, and language were used by few. There is a lack of academic achievement tests. Screening tests played a minor role in specialized assessments, and symptom validity tests were seldom applied on a standard basis. Most tests were of Anglo-American origin. Conclusions: New test methods are implemented rapidly in the Nordic countries, but test selection is also characterized by the dominating position of established and much researched tests. The Halstead–Reitan and Luria traditions are currently weak, but national differences in size of test batteries seem to be influenced by these longstanding traditions.

Prevalence and Predictors of Personality Change After Severe Brain Injury

OBJECTIVES To investigate the prevalence of personality change after severe brain injury; to identify predictors of personality change; and to investigate whether personality change is associated with distress in family members. DESIGN A longitudinal study of personality change. SETTING Rehabilitation unit. PARTICIPANTS The study sample was composed of 22 pairs of patients with traumatic brain injury or nontraumatic brain injury (N=22) and their significant others (SOs). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES An SO completed the observer version of the NEO Five Factor Inventory rating the patient at discharge from hospital and 1 year after injury. The SOs were also asked to complete the anxiety and depression scales of the Symptom Checklist-90-Revised, rating their own emotional condition and health-related quality of life (HRQOL) as assessed by the 4 mental scales of the Medical Outcomes Study 36-Item Short-Form Health Survey. RESULTS Of the sample, 59.1% experienced personality change after acquired brain injury, and the most dominant changes were observed in the personality traits of neuroticism, extraversion, and conscientiousness. Changes in neuroticism were most often observed in patients with frontal or temporal lesions. Generally, personality changes in patients were not associated with more distress and lower HRQOL in family members; however, change in patient agreeableness was associated with lower HRQOL on the role limitations-emotional scale. CONCLUSIONS Personality change was observed in most patients with severe brain injury. Change in neuroticism was associated with frontal and temporal lesions. Generally, personality change was not associated with more distress and lower HRQOL in SOs.

Caregiver burden in Danish family members of patients with severe brain injury: The chronic phase

Abstract Objective: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. Methods: Forty-four Danish caregivers of patients with severe brain injury were contacted 3–6 years post-injury and asked to complete a measure of caregiver burden. Results: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. Conclusions: The findings emphasized the continuing consequences of brain injury on not only the individual with the brain injury, but also on the surrounding family. Spouses, caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs experienced higher levels of burden in the chronic phase. Future intervention programmes should target such specific caregivers, who might need more support and long-lasting help.

Family needs after brain injury: A cross cultural study

OBJECTIVE The objective of this study was to explore differences by country in the importance of family needs after traumatic brain injury (TBI), as well as differences in met/unmet needs. METHOD Two hundred and seventy-one family members of an individual with TBI in Mexico, Colombia, Spain, Denmark, and Norway completed the Family Needs Questionnaire. RESULTS Eight of the ten needs rated as most important globally were from the Health Information subscale. Importance ratings on the Health Information, Professional Support, and Involvement With Care subscales were similar across countries, but Mexican family members rated Instrumental Support needs as less important than Colombian, Spanish, and Danish family members, and also rated their Community Support needs as less important than Danish and Spanish family members. Mexican family members rated emotional support needs as less important than Colombian, Spanish, and Danish family members. Globally, the needs rated as most often met were from the Health Information subscale, and the most unmet needs were from the Emotional Support subscale. CONCLUSION Despite some similarities across countries several differences were identified, and these can help professionals to provide more culturally appropriate rehabilitation services for family members in order to improve informal care for TBI.

NEUROPSYCHOLOGICAL INTERVENTION IN THE ACUTE PHASE: A PILOT STUDY OF EMOTIONAL WELLBEING OF RELATIVES OF PATIENTS WITH SEVERE BRAIN INJURY

OBJECTIVE This pilot study investigated the effects of acute neuropsychological intervention for relatives of patients with severe brain injury. METHODS Participants were enrolled in an intervention group comprising 39 relatives, and a control group comprising 47 relatives. The intervention consisted of supportive and psycho-educational sessions with a neuropsychologist in the acute care setting. RESULTS The intervention group completed self-report scales in the acute setting and after the intervention at admission to sub-acute rehabilitation. The control group completed the self-report scales only at admission to sub-acute rehabilitation. Outcome measures included selected scales from the Symptom Checklist Revised 90 (SCL-90-R), the Short Form 36 (SF-36), and a visual analogue quality of life scale. The intervention group showed a significant decrease in anxiety scores from the acute to the sub-acute setting (t = 2.70, p = 0.010, d = 0.30), but also significantly lower Role Emotional scores (t =  2.12, p = 0.043, d =  0.40). In the sub-acute setting, an analysis of covariance model showed a borderline significant difference between the intervention and the control group on the anxiety scale (p =  0.066, d = 0.59). CONCLUSION Any effects of the acute neuropsychological intervention were limited. Further research is needed to explore the effects of different interventions in more homo-genous and larger groups of relatives.

CLINICALLY SIGNIFICANT CHANGES IN THE EMOTIONAL CONDITION OF RELATIVES OF PATIENTS WITH SEVERE TRAUMATIC BRAIN INJURY DURING SUB-ACUTE REHABILITATION

OBJECTIVE To investigate clinically significant change in the emotional condition of relatives of patients with severe traumatic brain injury during sub-acute rehabilitation. METHODS Participants were 62 pairs of relatives and patients. Relatives completed the anxiety and depression scales from the Symptom Checklist-90-R (SCL-90-R) when the patients were admitted to sub-acute rehabilitation and at discharge. Improvement in emotional condition was investigated using the following criteria: (i) statistically reliable improvement; and (ii) clinically significant change (CSC). RESULTS At admission, 53.2% and 58.1% of relatives had scores above cut-off values on the anxiety and depression scales, respectively. On the anxiety scale 69.7% of these experienced a reliable improvement according to the Reliable Change Index (RCI) and 45.5% also obtained CSC, as their end-point was below the cut-off value. On the depression scale the corresponding figures were 44.4% and 41.7%, respectively. When comparing relatives with and without CSC, we found that CSC in symptoms of anxiety was associated with significantly better functional improvement during rehabilitation and a shorter period of post-traumatic amnesia in the patients. CONCLUSION Of the relatives who reported scores above cut-off values on the anxiety and depression scales at patients admission, approximately 40% experienced CSC in anxiety and depression during the patients rehabilitation. Relatives of patients experiencing improvement during inpatient rehabilitation are more likely to experience CSC in anxiety.

Questionnaire use among Nordic neuropsychologists: Shift from assessing personality to checking ecological validity of neuropsychological assessments?

The core method of neuropsychologists has been to collect structured samples of behavior through standardized tests. Information that cannot be elicited through tests may be gathered by questionnaires asking questions about behavior. Tests may deconstruct cognitive function precisely, but lack the ecological validity of questionnaires. Thus, many neuropsychologists have advocated more use of questionnaires, but it is not known whether professional practice has changed. Until recently, personality instruments were the only widespread questionnaires in frequent use among neuropsychologists. We studied the inventory use of 702 Nordic neuropsychologists. The most used questionnaires are listed, and differences between countries are analyzed. In addition, the questionnaires are grouped with regard to whether they map cognition, behavior not observable during consultations, emotional symptoms, personality, or are diagnostic tools. The study showed an average use of 8.4 questionnaires (SD 6.4), with a range from 4.5 in Finland to 11 in Norway. Emotional symptoms were most frequently assessed, closely followed by questionnaires of cognition. There was a very low usage rate of personality measures, even though the Minnesota Multiphasic Personality Inventory (MMPI-2; Hathaway & McKinley, 1951) and other measures have been available in the Nordic countries for years. Questionnaire use correlated highly with test use. Frequency of assessment of neuropsychiatric disorders mediated high questionnaire use, whereas assessing patients with neurological conditions predicted below average use of questionnaires. The study indicates a shift from assessing personality to using questionnaires to check the validity of test results. The shift is probably mediated by the expansion of clinical neuropsychology into the field of psychiatry.

Relatives of patients with severe brain injury: Growth curve analysis of anxiety and depression the first year after injury

Abstract Primary objective: To investigate trajectories and predictors of trajectories of anxiety and depression in relatives of patients with a severe brain injury during the first year after injury. Research design: A prospective longitudinal study with four repeated measurements. Subjects: Ninety relatives of patients with severe brain injury. Methods: The relatives were assessed on the anxiety and depression scales from the Symptom Checklist-90-Revised and latent variable growth curve models were used to model the trajectories. The effects of patient’s age, patient’s Glasgow Coma Score, level of function and consciousness, gender and relationship of the relatives were modelled. Results: Improvement was found in both symptoms of anxiety and depression during the 12-month study period. The analysis revealed different trajectories for symptoms of anxiety and depression, as anxiety had a more rapid improvement. Higher initial level of symptoms of depression was seen in female relatives. Higher initial level of anxiety was associated with younger patient age, lower level of function and consciousness in the patient and the relative being female or the spouse. Conclusion: Future research and interventions should focus not only on specific deficits in the patient, but also on how the emotional state and well-being of the relatives evolve, while trying to adjust and cope with a new life-situation.